What are ERNs?
ERNs are virtual networks that link specialists across Europe. They support doctors in Ireland by providing access to expert advice, shared guidelines, research, and training in rare and complex diseases.
What is the Clinical Patient Management System (CPMS)?
The CPMS is a secure online platform enabling clinicians within ERNs to discuss patient cases virtually with other experts across Europe. It supports multidisciplinary care planning, ensuring that patients benefit from the best available knowledge without the need to travel abroad.
This can enable virtual consultations and discussions between health care professionals, if this is deemed to be necessary. This assumes that international experts respond to the call for engagement with specific cases. This is not a consultation service for patients to access directly.
ERN RITA
A medical doctor from an ERN RITA healthcare provider was treating a patient with a challenging refractory disease (dermatomyositis) and turned to the CPMS for advice. The rapid CPMS interaction with ERN RITA specialists across Europe led to the identification of a more effective therapy for the patient.
How do ERNs support healthcare professionals?
- Case discussions: discuss challenging cases, access expert opinions, and improve diagnosis and treatment planning
- Best practice sharing: Access and contribute to clinical guidelines, patient journeys, and care pathways and facilitate the sharing of research findings related to rare diseases
- Professional network: Collaborate with peers across Europe in your specialty
- Improved patient outcomes: Support earlier diagnosis, tailored treatment, and better long-term care
What ERN training and education opportunities are available for healthcare professionals?
ERNs offer a variety of training and education opportunities for healthcare professionals to improve care for rare disease patients.
More information on training and education opportunities may be available through each individual ERN website.
Training and education opportunities are delivered through a number of online platforms including webinars, knowledge exchanges, on-site training and the ERN Academy and specific ERN Programmes.
- The ERN Exchange Programme
Click on the link below to learn about the ERN Exchange Programme and hear from medical professionals who took part in the programme, who share their experiences, and describe how Exchanges contribute to enhancing access to high quality care for patients with rare diseases and complex disorders in EU Member States.
ERN Exchange Programme (video)
Other opportunities include the following:
- ERN-LUNG Academy:A curriculum for medical staff on rare respiratory diseases, including webinars, eCases, and on-site training.
- ERN eUROGEN's Webinar Programme:Offers CME-accredited webinars on urogenital diseases, collaborating with other ERNs and patient representatives.
- ERN-RND:Provides webinars on rare neurological diseases in collaboration with EURO-NMD and the European Academy of Neurology (EAN).
- ERKNet Clinical Exchange Programme: This programme is intended to share knowledge and promote collaboration between young health care professionals within ERKNet.
- EJP RD Funded ERN Training Workshops (ejprarediseases.org): Focus on innovative research methodologies and in
- ERN Academy (academy.europa.eu): An online platform with educational resources developed by EU institutions, including training on the development of clinical practice guidelines
On the JARDIN website you will find the ERN Resource Kit (jardin-ern.eu), which provides recently published EC booklets and fact sheets about ERNs.
To access click on the following link https://jardin-ern.eu/resource/european-reference-networks-resource-kit/
Where to find more help and information:
National Rare Diseases Office
The NRDO aims to inform, support and empower people affected by rare conditions, their families and healthcare professionals. It was established by the HSE in 2015 as the national rare disease ‘coordination hub’ and the HSE main contact and driver of rare disease initiatives and projects.
National Rare Disease Information Service
The National Rare Disease Information Service provides current and evidenced based information on rare conditions and signposts to available rare disease expertise, supports and resources
Rare Disease Care Pathways
The National Rare Diseases Office has developed a series of integrated care pathways for rare conditions. These care pathways are based on clinical practice guidelines and developed in collaboration with national clinical experts and Irish patient organisations. Care Pathway development includes mapping of national multidisciplinary RD expert centres as well as the Orphanet diseases definition and codes.
List of approved rare disease care pathways
Orphanet
Orphanet is the largest international Rare Disease information portal. It is a public resource and free to use for anyone. It is a reliable source of information on Rare Diseases and the information is standardised, validated and curated.
Orphanet enables you to find out about:
- Rare diseases, including signs and symptoms
- National and European centres of expertise for rare diseases
- National and European patient organisations that provide support for people living with rare diseases
- Expert resources including clinical trials, ongoing research projects, medical laboratories and registries
- Clinical Practice Guidelines for some rare diseases
- An inventory of orphan drugs authorised by the European Medicines Agency
Irish data on Orphanet is managed by the HSE’s National Rare Diseases Office. If you want to register your service or information on Orphanet, contact Orphanet Ireland at Orphanet.Ireland@mater.ie
National Rare Disease Strategy 2025-2030
The National Rare Disease Strategy 2025-2030 (insert hyperlink) aims to provide a renewed focus on rare diseases, building on the work of the National Rare Disease Plan for Ireland 2014 - 2018, to meet the needs of people living with rare diseases, their families and healthcare professionals over the next five years.
The vision of this strategy is to ensure that all people living with a rare disease, and their families, have access to equitable, inclusive and cross-sectoral care throughout their life journey that will enable them to reach their full potential and to live their best lives.
The strategy was co-developed with people living with rare diseases, carers, clinicians, healthcare professionals, patient advocates, and researchers. It focuses on four key priorities:
- Earlier and more accurate diagnosis, including expanded newborn screening and better access to genetic services
- Person-centred, integrated care across health and social services, tailored to each person’s journey
- Stronger national and international collaboration, including full integration with all ERNs
- Investment in innovation, research and workforce training to future-proof rare disease care in Ireland
With over 300,000 people in Ireland affected by rare diseases, this strategy is a roadmap for action. It aims to reduce diagnostic delays, improve access to expert care, support mental and social wellbeing, and ensure the rare disease community is a valued and active partner in shaping the services that support them.
National Rare Disease Strategy 2025 - 2030
The HSE Model of Care for Rare Diseases (2019)
The Model of Care for Rare Diseases (PDF, 682 KB, 70 pages) outlines the current vision for delivery of integrated care for individuals affected with rare diseases living in Ireland.
The Model of Care aims to improve the multidisciplinary care pathway for all people living with a rare disease and their families and carers.
There is an emphasis on access to safe, high-quality care and related clinical research accessed through national centres of expertise or in collaboration with neighbouring centres of expertise, delivered as close to the patient’s home as possible.
